All posts by It's My Time Now

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About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.

Dementia: Wonder Woman Is Back!

Mixed Dementia,

Image result for Wonder woman pictureMost people who came across Maureen yesterday would not have believed she has a diagnosis of severe dementia.  He exploits even amazed me:

  • She booked her own appointment at the Reception Desk of our dentist.
  • She accompanied me and Girl Monday around several shops in Cleethorpes.
  • She held her own in an interview with a representative from our Care Agency
  • She entertained our Key Worker.
  • She saw off a District Nurse who was enquiring if she needed a flu jab.

This morning she has had a shower and washed her own hair.

I had a funny feeling that once the builders had finished their work that Wonder Woman would be back.  That doesn’t mean that there won’t be days when things are difficult but we all have bad days!

 

Dementia: Positive News

Mixed Dementia,

Some positive news from last week:

  • My reviewer tells me that Dale’s book: ‘The End of Alzheimer’s’ is worth reading.
  • I am allowed to swim breaststroke.
  • Riding my bike is good for my legs.
  • We have taken several siestas and slept well over the weekend.
  • The clearing up exercise after our extension has moved a stage further.
  • My Admiral Nurse returns to work today after a week’s leave.

Sometimes you just need a break and two came my way on Friday.  Firstly, my physiotherapist enlightened me about the benefits of swimming breaststroke, the only stroke I can do, and riding my bike.  I had been under the misapprehension that both were not advisable following hip replacement.  Secondly, my neighbour who is a scientist agreed to review Dale Bresden’s book.  When I spoke to her yesterday she suggested that it might not be too late for Maureen to benefit from his thinking.  I’m sure all of this news is helping me to sleep a little easier in bed at night, as is the thought that my Admiral Nurse will be available this week so that I can chat with her about my reservations about Maureen going into the Konar Suite.

From today I have decided to set some targets at the start of each week:

Personal targets:

  1. To swim breaststroke at the Leisure Centre on two occasions.
  2. To resume attending Buddhist Meditation Classes on Wednesday evenings.
  3. To progress fitting vinyl flooring in our Sun Room.
  4. To read further chapters from: ‘You Are The Placebo’.

Carers targets:

  1. To continue involving Maureen in personal care.
  2. To take Maureen out for a walk twice this week.
  3. To take Maureen clothes shopping.
  4. To involve Maureen in further household tasks.

I will review progress next week so in future, Positive News will be the focus on Monday’s – a  Jungle Book approach to life:

 

Dementia: Meditation And Mindfulness

Mixed Dementia

Today’s lesson from Kelsang Dekyong:

We didn’t make it for a swim yesterday as Maureen rested for large parts of the day.  She seems exhausted at the moment and has slept well through the night.  If this warm spell continues a walk on the beach beckons after breakfast this morning.

Maureen is very sad today.  When I asked her what was wrong she says she ‘wants to go home to be with her family’.  Then she says ‘they would probably be too busy to talk to me’.  My guitar playing brother in law always points out that how busy people are is a matter of choice.  I wonder if he’s got this one in his repertoire:

Dementia: Tears In Heaven

Mixed Dementia

My brother in law assures me he would have opened our Sun Room on Tuesday with the above number if the acoustic had been right.  However, as the flooring had not been laid the sound check was not to his satisfaction.  He assures me he will be back once the vinyl is laid!

The standing joke in our family is if you mention an artist or a band from the 60’s my brother in law swears he has backed them.  Who am I to contest his distant memory of playing with the Chicanes alongside the Cream at the Swan at Yardley when Clapton was a member?  What is beyond refute is the exceptional support my sister and her husband gave us when they visited on Tuesday.  As the man says: you find out who your friends are when dementia is in the household!

We have had another good night’s rest.  Maureen woke at 4 am worrying that ‘they had all gone’ and she had been left here by herself.  This fear of being deserted is constant and she expects me to leave her: to run off with another woman.  Just to put her mind at rest this morning, I’m going to suggest that she accompanies me to Cleethorpes Leisure Centre.  It would be wonderful if I could persuade her to have a swim but even walking along the Promenade with Girl Saturday would be real progress.  Then if the going is good we might even have a snack at one of the cafes on the seafront!

Dementia: The Most Amazing Day

Mixed Dementia

Posted at 6 am after an amazing sleep.

Image result for An Amazing Day

Yesterday was nothing short of amazing.

We received outstanding support from the early hours and Maureen thrived as the day progressed.

  • Our early morning visitor, a nurse, gave me a bird’s eye view of the Konar Suite and paved the way for a personal inspection.
  • Our Key Worker phoned at 8 am to catch up on developments
  • Once the after effects of lorazepam wore off Maureen was in great voice.
  • The  Home Treatment team rang by 10 am to check on Maureen’s sleep pattern.
  •  As soon as ‘Girl Friday’ arrived Maureen asked her for personal care.
  • My conducted tour of the Konar Suite took place before noon.
  • On my return home, my well-groomed wife was singing along with Girl Friday.
  • An impromptu call at Clee Medical Centre led to a GP appointment.
  • The dip test suggested Maureen doesn’t have a UTI.
  • Maureen’s blood pressure was excellent; lower than it had been for ages.
  • Maureen had great fun playing with a four-year-old boy in the Waiting Room.
  • Maureen loved shopping in Cleethorpes and seeing lots of friendly faces.
  • Maureen fell asleep late afternoon and we have both slept for most of the night.

On reflection, I think it is possible that Tuesday’s visit by Occupational Therapists spooked Maureen.  She may well have been thinking ‘he is conspiring to lock me away again’ and sought comfort in delusions on Wednesday.  I realise this is all conjecture, but what else is there?

There are no experts on dementia – only considered points of view!

Dementia: Reviewing The Situation

Mixed Dementia, ,

Maureen is very shaky this morning.  She is more confused than ever and unsteady on her feet.  A small amount of lorazepam has given her much needed rest and some respite from her delusions.

I’m currently reviewing our situation.

Dementia: It’s All Been Worth It

Mixed Dementia, ,

Image result for It's All Been Worth It

The struggles of the last few months all seemed worthwhile yesterday when our visitors from Occupational Therapy made it clear that they supported our approach to ‘seeking the good life’.  They were impressed with our extension and how we have attempted to prepare for what might lie ahead.  They also supported how I attempt to resolve issues of independence and safety.  Once we have made a couple of minor changes to our set up OT feel that we have addressed all predictable risks.

Maureen was in exceptional Hostess Mode all day.  Her intelligence and humour shone through as she showed OT the ropes.  She continued in a similar vein when in the company of my sister and brother in law.  In fact, she was in such good form that there were occasions when some observers may have questioned her diagnosis of dementia.

Maureen has paid a heavy price for the overstimulation that I subjected her to yesterday.  She is now hyperactive and has not slept all night.  I should have left things as they were with my sister visiting today.  I’m paying a small price for my naivety as I try to support a very confused wife this morning.

We appear to be on a Cruise Ship again this morning.  I hope Maureen is not too disappointed when we dock at Grimsby:  we couldn’t possibly pull into Cleethorpes with the tide going out!

 

Dementia: It’s Looking Good!

Mixed Dementia

Image result for It's Looking Good Picture

Everyone who has seen it is impressed with our Sun Room: it has the wow factor.  I will post photographs later in the week.  When Our Key Worker visited yesterday he was very impressed with the facilities we now have at our disposal.

This morning a Risk Assessment will be undertaken by Occupational Therapy to ensure Maureen’s safety in our reconfigured home,  They will also give advice on the best use of the space we now have at our disposal.

Focus Adult Social Care will then need to review our Care Plans.

 

Its the job, stupid

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A very forthright perspective from George Rook which deserves to be shared widely.

georgerook51's avatargeorge rook

Does dementia matter?

I am increasingly annoyed about why the majority of clinical staff do not see that caring for dementia is part of the job.

It’s as if… no, it really is that they are trained and developed during their working lives to do the traditional physical clinical work. To deal with the diseases and trauma they see every day.

So, pneumonia, cancer, prostatitis, back pain, arthritis, and everything else…these are what nurses, therapists and doctors do. They diagnose, treat, discharge.

And they’re really good at this. They’re professionals.

And they know and recognise that many patients have more than one condition. Multiple co-morbidities.

So for example, they’ll check blood pressure, diabetes, heart disease, and make sure the interdependencies and drug effects don’t conflict.

They’ll check that my eGFR is high enough to allow me to have an angina drug which might damage my kidney.

But it seems that…

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Dementia: Coaching Needed!

Mixed Dementia, ,

 

Image result for Coach needed PictureA frequent lack of cognition, paranoia, hallucinations, and anger are now constant features of Maureen’s presentation.  Last night was a belter.  The old chestnut of finding the toilet and how to use it reappeared.  This was followed by a diatribe on my misdemeanors and shortcomings.  Then comfort was sought as I slept in the spare room as Maureen believed ‘the girls were gassing her as they didn’t like her’.  A  short while afterward I was forcefully told ‘I was not doing’my job’ as I encouraged her to get her own drink of water.

Maureen’s presentation is seen as par for the course for mixed dementia so a Care Coordinator is not needed.  Yet Trazodone has been prescribed ‘to make my life easier’.  Following my reluctance to administer, a planned admission to an Acute Mental Health Unit – the Konar Suite – was on the cards.   Now that is not seen as the way forward we are left with the Best Interest Meeting on Maureen’s future care and accommodation in four weeks time.

Our Key Worker is visiting this afternoon and I will ask him to clarify who is responsible for coaching me on how to resolve the recurrent ongoing challenges.  A meeting in four weeks time may be helpful to those who are concerned with the Mental Capacity Act but I need mentorship now!

Someone who doesn’t need coaching is a new carer we had yesterday:  she was excellent from the time she took Maureen’s arm when she met us on the street.  Maureen fell asleep shortly after she was nursed home and new Gir Saturday/ Sunday helped me to mop up from the flood that Maureen had caused by leaving the tap on with the plug in a sink.  Just another occasion when I’m wise after the event: plugs and sinks don’t mix when dementia is around!